4 Memoria 2013 Resumen de actividades y proyectos de la Asociación Piel de Mariposa en Annual Report Butterfly Children Charity 2013: Summary of activities & projects. La Asociación Piel de Mariposa (DEBRA España) tiene como misión mejorar la calidad de vida de personas afectadas por Piel de Mariposa, ofreciendo apoyo tanto a afectados y familiares, como a todos los profesionales socio-sanitarios del entorno del afectado. Durante 2013 nuestra Asociación ha contado con 211 socios con Piel de Mariposa que junto a sus cuidadores suman un total de 491 beneficiarios directos. Paralelamente, consideramos beneficiarios indirectos a los profesionales que atienden a los afectados (4 por afectado) sumando un total de 844. La Asociación lleva a cabo su labor en base a 5 ejes estratégicos: 1. Apoyo y respiro. 2. Defensa de derechos. 3. Formación e investigación. 4. Recaudación de fondos. 5. Sensibilización. The mission of DEBRA Spain is to improve the quality of life to Butterfly Children and their families by providing direct support and care as well as support to health and social care professionals. In 2013, we had 211 members registered with the condition, which together with their carers made up a total of 491 direct beneficiaries. We estimate that each one of our members has regular contact with at least four professionals, totalling a number of 844 indirect beneficiaries. Our work is based on five strategic areas: 1. Support and respite. 2. Patient rights. 3. Training and research. 4. Fundraising. 5. Awareness. 1. Apoyo y respiro a afectados, familiares y profesionales Estas actividades están destinadas a proporcionar asistencia, orientación, apoyo y respiro a personas con Piel de Mariposa, familiares y profesionales. Se lleva a cabo mediante atención directa con familias (in-situ y a distancia) y a través de la coordinación con entidades de servicios públicos y privados (redes de apoyo, centros educativos, sociales y sanitarios, entre otros). Aquí se incluyen los proyectos de 1) Servicio de información y orientación psico-socio-sanitaria, 2) Visitas a recién nacidos, 3) DEBRA en Casa, 4) Hogar Respiro Piel de Mariposa, 5) Visitas multidisciplinares al Hospital La Paz y el 6) Encuentro Nacional de afectados y familias. 1. Support and respite for sufferers, relatives and health professionals These activities are centred on the provision of information, support and respite to people with Butterfly Skin, their carers, family members and health professionals. Support is provided directly to families as well as to public and private service entities (support networks as well as education, social and health centres) through the following projects: 1) Information Service for Health, Psychological and Social related issues ; 2) Visits to new-born babies ; 3) DEBRA at Home ; 4) Respite Home in Marbella ; 5) Multi-disciplinary visits to La Paz Hospital, Madrid ; 6) National Meeting for Families. 4 I EBNews I junio 2014

5 Servicio de Información y Orientación Psico-Socio-Sanitaria A través de este servicio se da respuesta a consultas que llegan a nuestros profesionales por parte de afectados, familiares y profesionales, principalmente de España, pero también de países de América Latina. Desde el equipo de enfermería se han atendido consultas sobre heridas y procedimientos de cura, complicaciones derivadas de la enfermedad y todo tipo de dudas que surgen en el día a día de una persona afectada. Del mismo modo, se han resuelto demandas por parte de profesionales sanitarios que tratan a personas que sufren la enfermedad. Nuestra psicóloga ha recibido demandas relacionadas con las diferentes etapas de la vida (infancia, adolescencia, periodo educativo, edad adulta) y ha ofrecido apoyo al cuidador y a la familia, además de a otros profesionales que atienden a nuestras familias. La trabajadora social por su parte ha apoyado a las familias, y a los profesionales que les atienden, en los trámites necesarios para obtener derivaciones a especialistas, acceso al material de cura, productos de apoyo, certificado de discapacidad, prestaciones económicas y la valoración por la Ley de Dependencia entre otros. Visitas a recién nacidos El nacimiento de un hijo con Piel de Mariposa es una de las circunstancias más complejas y traumáticas a las que se puede enfrentar una familia. Durante los primeros días, los padres viven una gran incertidumbre debido a la complejidad de la enfermedad así como al desconocimiento que existe de la misma por parte de los profesionales que les atienden. Acompañar a la familia para aliviar el sentimiento de soledad y desamparo, ofreciéndoles un punto de apoyo para el presente y el futuro, es el objetivo principal de este servicio. La manera en que las familias afrontan la nueva situación es de vital importancia ya que repercutirá sobre el bienestar de toda la unidad familiar. En DEBRA España llevamos 5 años apoyando a las familias en estos primeros momentos, desplazándonos a cualquier lugar de España para poner al servicio de la familia y los profesionales nuestra experiencia, conocimientos y apoyo. DEBRA en casa La Piel de Mariposa, por ser una enfermedad poco frecuente, genera muchas dudas y preguntas en el entorno del afectado (cuidadores, profesores, médicos, trabajadores sociales, etc.). A través Information Service for Health, Psychological and Social related issues This service is managed by our trained professionals and addresses queries received from sufferers, family members and professionals, mainly from Spain, but also from Latin American countries. Our team of nurses provides advice concerning wound care and dressing procedures, complications originating from the condition, and all kinds of doubts that arise on a day-to-day basis from members and their carers. In a similar fashion we respond to enquiries from health professionals involved in the treatment of the condition. Our psychologist addresses enquiries relating to the different stages of life (infancy, adolescence, educational period, adult stage) and provides invaluable support to our members and their families. Support is also offered to professionals who attend to our families. Our social worker supports families and professionals in matters such as referrals to specialists, access to wound care dressings, sourcing support products, disability certificates, economic benefits, etc. Visits to new-born babies The birth of a Butterfly Child is one of the most complicated and traumatic circumstances that a family can be faced with. During the first few days the parents live through an enormous amount of uncertainty due to the complexity and severity of the condition and quite often due to the lack of knowledge that exists by the attending professionals. The way in which a parent faces up to the birth of a baby with the condition is of vital importance as it impacts on the well-being of the whole family unit. The main aim of this service is to be with the family, providing both experience and knowledge, and alleviating feelings of solitude and helplessness by reassuring them of our unconditional support, present and future. In recent years, the DEBRA Spain team has travelled all over Spain, assisting families in these first vital moments. DEBRA at Home Butterfly Skin is an incurable and chronic disease which affects all aspects of daily life. As with any rare disease, many doubts and questions arise from people surrounding the sufferer (carers, teachers, doctors, social workers, etc.). Through the DEBRA at Home project, our team travels to the family s home, making sure that the visit coincides with other professionals. This allows us to gain first-hand knowledge of their requirements and enables us on the one hand to provide direct support to alleviate many of the day to day uncertainties and on the other hand, allows us to provide the resources for their individual needs. junio 2014 I EBNews I 5

6 We really care for our clients and their families. Yesterday, today and in the future. Does your adviser? We need to talk WNT57-es Blevins Franks Financial Management Limited (BFFM) is authorised and regulated by the Financial Conduct Authority in the UK, reference number Where advice is provided outside the UK, via the Insurance Mediation Directive from Malta, the regulatory system differs in some respects from that of the UK. Blevins Franks Trustees Limited is authorised and regulated by the Malta Financial Services Authority for the administration of trusts and companies. Blevins Franks Tax Limited provides taxation advice; its advisers are fully qualified tax specialists. This promotion has been approved and issued by BFFM. 6 I EBNews I junio 2014

18 Reivindicaciones y derechos Our rights and our demands La Asociación Piel de Mariposa (DEBRA España) dedica actualmente la mayor parte de sus recursos a ofrecer a las personas que sufren esta enfermedad servicios y apoyos que por principio deberían estar cubiertos por las Administraciones en general, y por el Sistema Nacional de Salud en particular. Nuestras reivindicaciones se centran en tres aspectos básicos e imprescindibles para su calidad de vida y la de sus familiares: Atención sanitaria especializada y de fácil acceso Reivindicamos de manera urgente la designación de centros, unidades o servicios de referencia para la Piel de Mariposa en España. Proponemos iniciar el proceso con el Hospital de La Paz debido a la experiencia acumulada en los últimos años. Después deberían seguirle otros centros en otras Comunidades Autónomas. Paralelamente es necesario que la Administración publique y garantice la ruta de derivación oficial que permita la circulación efectiva de personas con enfermedades raras entre comunidades autónomas (e incluso internacionalmente) para que reciban una correcta atención sanitaria. En la actualidad existen multitud de trabas burocráticas en el acceso a una atención sanitaria apropiada, tal y como nos trasladan las familias a las que atendemos. Acceso a los tratamientos adecuados La Piel de Mariposa no tiene cura y no existen medicamentos específicos para tratarla. Los tratamientos son en realidad cuidados paliativos y cuidados preventivos para hacer frente o retrasar las distintas complicaciones características de la misma. Los procedimientos de cura y vendaje que los afectados necesitan hacerse cada 2 ó 3 días requieren de materiales específicos (vendas, apósitos, cremas, etc.) cuya dispensación no está garantizada de manera equitativa en España. Demandamos por tanto que el acceso a dichos materiales sea ágil, sencillo, gratuito y en las cantidades necesarias. Fisioterapia, complementos alimenticios y apoyo psicológico son algunos ejemplos de otros tratamientos imprescindibles que los afectados necesitan para mejorar su estado de salud y bienestar. Sin embargo el Sistema Público no los facilita, entre otras razones, porque las personas que padecen Piel de Mariposa no son consideradas oficialmente por el Sistema Socio-sanitario como enfermos crónicos y/o graves, lo que limita sus derechos como pacientes. Una circunstancia que consideramos necesario solventar. Apoyos Sociales La carga social de la enfermedad Piel de Mariposa es inmensa tanto para quien la padece como para su entorno familiar. Es preciso que los apoyos, ayudas y recursos sociales sean adecuados a las circunstancias especiales de los afectados y sus familias. Normalmente los legisladores que redactan las normas y los profesionales que evalúan las situaciones desconocen completamente la enfermedad. Por tanto reclamamos un ajuste de la legalidad a la realidad social de nuestro colectivo en áreas como la conciliación de la vida laboral y familiar, la discapacidad, la dependencia, la educación, etc. The Butterfly Children s Charity (DEBRA Spain) currently assigns the majority of its funds and resources to the provision of services and support to patients which should be covered by the national health system. Our demands are centred around three basic, but essential principles to ensure the best possible quality of life for patients and their families: Readily available specialist health care We are urgently demanding the need for specialist centres or centres of reference for this condition in Spain. We have started this process with the Hospital de la Paz because of the experience they have acquired treating patients over the last few years. We hope to use this centre as a reference for hospitals in other regions. Simultaneously it is essential that the public administration services officially guarantees the right to the referral of patients between hospitals in different regions and even to hospitals outside of Spain so that they can receive the correct treatment and support. Patients currently face a wall of administration and bureaucracy which prevents them from receiving adequate health care. Access to adequate treatments Butterfly Skin has no cure and there are no specific medications available to treat the disease and the treatment is purely palliative. The bandaging and treatment required every 2 to 3 days is to help heal existing wounds and prevent new ones from appearing. Very specific bandages, dressings and creams are needed to minimise discomfort and pain and these are unfortunately not currently made available to all patients in Spain. We demand the right for patients to have free and easy access to these materials. Physiotherapy, nutritional supplements and psychological support are just some of the essential therapies required by patients to improve health and wellbeing. The public health service currently refuses to facilitate these requirements, in part because people with Butterfly Skin are not officially considered to be patients with a chronic condition. This in turn limits their patient rights. This urgently needs to be addressed and resolved in order for patients to receive the correct care. Social Care and Support The effect of the disease on patients and families is all consuming. The disease leads to disability, dependancy, social exclusion and economic difficulties. Adequate support and social care to fit the circumstance of living with this disease is so important to patients and their families. The disease is unknown to the people who outline the regulations for access to health care and they are totally unsuitable to be in a position of making a decision on what kind of support is required for patients with EB. We are demanding a change in the system to ensure patients receive the best possible support, the correct social care and benefits, the right to access education and equal opportunities in the work place. 18 I EBNews I junio 2014

19 junio 2014 I EBNews I 19

20 Mini News El impulso de las tiendas solidarias Gracias a la dedicación de las responsables y el apoyo de BBVA y Fundación Botín) pronto abriremos dos nuevas tiendas en la provincia de Málaga y una en Barcelona, dentro de un ambicioso plan de crecimiento. Para lograrlo necesitaremos voluntarios comprometidos, clientes fieles y donantes de artículos de calidad. Putting the emphasis on charity shops Thanks to the incredible work and dedication of our charity shop managers, and the support from BBVA and Fundación Botin, we are opening two new shops in Malaga province and possibly one in Barcelona as part of our exciting plans for expansion.to match this growth we require support from committed volunteers, loyal clients and generous donors of quality products. El equipo crece Nuestro equipo crece para que lleguemos más lejos en nuestra misión de mejorar la calidad de vida de los afectados con Piel de Mariposa. Damos la bienvenida a los enfermeros Ana Belén y Alvaro. A María como responsable de tiendas solidarias. Silvia y Ana María en administración y recaudación. Además, Antonia, Ana y Esperanza en las nuevas tiendas solidarias. Somos ya un equipo de 23 personas que trabajamos para la causa de la Piel de Mariposa. A growing team Our team is expanding, allowing us to provide more support and better care to Butterfly Children and their families. We welcome Ana Belén and Alvaro to our nursing staff, Ana María and Silvia, to administration and fundraising, and María as the charity shops manager. Also Antonia, Ana and Esperanza as staff to the new charity shops. We are a team of 23 professionals now working for DEBRA Spain. 20 I EBNews I junio 2014

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